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Old 02-24-2013, 05:12 PM   #1
tammymarie1971
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just need encouragement

I was back in hospital again for 10 days, my blood levels can't seem to stay up and the exhaustion is unbelievable! Since I have been home I go from lazy boy to bed and that is about all. I do manage to get breakfast on the table my husband goes to work late to help me get the kids off to school. stairs are almost impossible to climb. I'm scared...I guess that is what it boils down to...And I feel like a lousy christian for not trusting God for my peace , especially when I am reaching for the ativan! I watched my mom deteriorate from MS when I was a kid and I hate that my kids have to watch me now!! I know that All things work together for good for those who love the Lord...I am just scared at what else is going to be stripped away before the end comes. I am jaundiced as well and my liver functions are way off the charts..I have been dealing with stage 4 since 2004 and I have never been this bad off..I wonder if this all is a reaction to a blocked bile duct which they stented and the tdm-1 and after breezing through many other treatments..tykerb, taxol, vinerolbine, xeloda, all the hormonals, herceptin,carboplatin, and ac. So right now I have tumors in the liver, stomach, and spine...I'm not really sure where I am going with all this I am eating red meat, grapes, chlorphyl, (sp) pineapple, bananas, gatoraide to help with the dehydration from the ugly d...although I am thinking this is my body's way of detoxing also treatment has been delayed 2 weeks hoping for my blood to pick up and then I will get a dose reduction of tdm1...I just hope you guys have some insight I wonder if it is time to call it quits or if that is even my call to make do i keep going as long as the onc is willing to treat.. I have had 4 tdm1 treatments do I wait and see what scans say...do I ask for another chemo to be added or will that make things worse for the blood levels...I feel more than discouraged I have always been the one "doing" now I have to humbly accept help....ARGGGGGGG. Thank you for letting me vent..I have wanted to earlier but the energy to get words down was too daunting...even showering or getting to the bathroom on time (thank goodness for tenas) is a feat! Please any words of wisdom or encouraging stories from experience would be so appreciated... I hate sounding so needy...\thanks again, Tammy
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Dx'd Dec'01 while 6mos preg. with #4. child (30yrsold)Mastectomy/AC chemo/radiation/ Recur:Mar'04 liver mets: 3 taxol/herceptin /liver resection/3 taxol/herceptin. Cured?
Recur: May'05 spine & Hip. New onc
treatment in Mexico Feb'06-Mar-06
back to Mexico June/July '06
Currently on herceptin/Zometa/Femara-recently added navelbine
Switched to arimidex Nov'06
ovaries removed June '07
ca15-3 in May'06 was 102
ca15-3 summer of '07 holding steady at 23!
ca15-3 slowly rising Dec & Jan 36, 38, 41 and Feb was 36
Feb '08 Liver, lung & Brain scan NED... bones are stable with even a couple spots gone. as compared with '06 scans
May '08 ca 15-3 is 55. Treatment is zometa, vinorelbine, herceptin and aromasin.
No signifcant changes.
Feb'09 Started Xeloda with herceptin..no more hormonals
Feb'09-June'09 tumor markers coming down again from 155 to 84
May'09 blood clots in lungs vena cava filter put in..Heparin shots daily for now.
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Old 02-24-2013, 05:38 PM   #2
KDR
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Re: just need encouragement

Tammy,
Your story is so inspiring. You are so inspiring. I hope that in the days to come you build your strength back. I'll be thinking of you.
Warmly
Karen
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Old 02-24-2013, 06:37 PM   #3
starwishn2
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Re: just need encouragement

Dear Tammy~
I don't have any words from experience as I'm still fairly new to this process. However, you sound like an incredibly strong and beautiful woman both in your courage to fight and your faith. I will add you to my prayers and wish you regained strength.
Jeri
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Diagnosed 16Dec1993 ITP (auto immune disease - low platelets)
Splenectomy 11Nov2009
Rituxen May2011
ITP playing nice
Diagnosed 3Jul2012 BC

2 cm - Grade 2 - Stage IIB
HER2+++

ER+/PR+
bilateral mastectomy 20Jul2012
Metastasized cancer found 1 lymph node
expanders placed during surgery
TCH chemo "cocktail" started 24Aug2012
every 3 weeks - 6 treatments
Herceptin - 18 treatments
LAST treatment Taxotere & Carboplatin 7Dec2012 -yay!
Continue with Herceptin 26Dec2012

Started Arimidex 01Jan2013 (for 5 years)
Surgery to remove expanders/reconstruction 18Jan2013
Infection in left breast from reconstruction/infection in most nails - SO many meds! 22Feb2013
Left implant not playing nice.... might need to remove and try again - blah! 04Apr2013
3Jul2013 - one year since diagnosis - booo cancer!

15Aug2013 LAST chemo infusion!! YIPPPEEE!!!
13Sep2013 2nd reconstructive surgery.. the FOOBs are looking good!



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Old 02-24-2013, 07:26 PM   #4
caya
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Re: just need encouragement

Tammy, I am sending you big hugs and encouragement from Ontario. Praying that the TDM1 is working its magic for you.

Keep strong, you are one amazing Warrior Woman!!

all the best
caya
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ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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Old 02-24-2013, 08:32 PM   #5
kvogler
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Re: just need encouragement

Honey, don't ever feel like you're a lousy Christian. I just had this conversation with a friend of mine who lost a sister-in-law to cancer (not breast--some rare type). My friend is having survivor's guilt and admitted though she's a Christian, she fears dying even though she knows she's not supposed to. You're not alone in how you feel. As long as you profess belief in the Lord, you're a good Christian. God knows we're imperfect beings. So please don't beat yourself up over that. Prayers are being said for you.
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Old 02-24-2013, 08:45 PM   #6
jml
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Re: just need encouragement

Oh my friend Tammy~
You deserve peace in any form you can find it, whether it be in your Faith or in a bottle of Ativan.
We deal with so so SO MUCH, and so often at the bottom of that long list is raw fear. Sometimes I think it's easier to distract & deal with the all the other stuff, but that fear still seeps through the cracks.
I hate every moment that you struggle with this monster and all the horror it brings with it, but know that I, we, your family here, hold you in prayer, love and light and offer whatever it is that you need to get through it, whether it's from moment to moment, day to day, treatment to treatment and even year to year.
Hold tight and stay strong, but when you can't, lean hard.

Keeping the Faith~

Jessica
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Old 02-24-2013, 10:13 PM   #7
yanyan
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Re: just need encouragement

Dear Tammy, you have been fighting it for an amazing 8 years !! I am touched by your strength and courage! I hope things will get better and you will resume your energy very soon! Hugs to you !
__________________
1/11 age 36 DX
ER/PR-, Her2 +
TCH*6, Herceptin
BMX with immediate recontruction 5/2011 Lattismus Flap- Dx stage 3c 10/23 nodes
9/11 Radiation
3/12 Local recurrence to skin stage IV
Whole body scan CLEAR
4/12 Tykerb & Xeolda Skin mets slowly regressing
8/12 PET & Brain CT Clear
5/13 Skin mets progressing
6/13 PET scan chestwall recurrence in contralateral anxillary,internal mammary and ipsilateral subpectoral nodes
6/13 kadcyla
10/13 whole body scan -clear NED. previously resolved skin rash gone but 3 new lesions. Biopsy confirmed for skin recurrence
11/13 to 02/14 tykerb & herceptin
02/14 add abraxane/gemzar, 2 weeks on 1 week off at reduced dose
05/14 whole body PET clear/ brain CT clear but skin mets are getting worse, ready for new chemo
05/14 navelbine perjeta herceptin
07/14 skin mets progressing red rash worse
08/14 wide local excision with diep flap to close wound. Final path shows 2 positive margins showing inflammatory carcinoma Going back to surgery in 2 weeks
09/01/14 resection- clear margins
3 weeks after 2nd surgery, a new nodular rash found near drain incision with 2 small red spots behind the chest wall biopsy on 10/1. Positive for breast cancer
Radiation 11/2014 with xeloda then weekly cisplatin
11/14 brain MRI clean
12/14 finished 33 radiations burnt and very painful. Bedridden for 1 week
12/14 t current Herceptin and perjeta only
02/15 rash on upper back right side skin mets radiation planned
02/15 staring electron radiation *35
Stopped at 30 due to severe skin burn, resumed 10 days later
05/15 red patches appeared in between previously radiated area, skin mets. Ct and brain Mri clear. Simulation planned, radiation to start after trip to Alaska.
05/24 new spot identified in scar line on previously radiated reconstructed breast- electron on both side chest wall area and scar line
07/15 multiple skin and lung recurrence begin halaven
11/15 cough much better but very tired on halaven and starting to see some new red skin blotches-suspicious
11/15 heading to China for immune therapy
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Old 02-25-2013, 02:08 AM   #8
michka
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Re: just need encouragement

Tammy, stay strong! If you read what I reported about my first months with TDM1 you will see that what you are living is not a bad sign. I am 9 months ahead of you I also needed a stent just before starting TDM1 and I also was exhausted (not tired, exhausted) the 10 first rounds. I could not stay up the 2 first weeks of every round. The third week was better but I was sooo tired. They told me they never had such a bad case. BUT the first scans were very encouraging so I resisted. Then they became good. Now I feel tired but not exhausted and I can live well. You are in a difficult period because your body has to recover from the stent story which is a lot and also cope with the fatigue induced by all the cancer cells being hit! PM me if you need. Hugs Michka
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08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 02-25-2013, 03:09 AM   #9
sarah
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Re: just need encouragement

Hello Tammy,
You're exhausted and that's normal and that makes you depressed which is also normal. What Michka says about the TDM-1 and others is very encouraging. Read books rather than watch televison - books really take you to another world and are wonderful whereas TV can often be depressing and cause anxiety.
There's been a lot of talk about ER+ people saying on anti-hormonals longer so maybe ask about that also.
If the Ativan isn't helping with the depression and anxiety, maybe your doctor can subscribe another one.
Make sure you get some good sleep and have good friends come over and visit but ones that understand your fatigue and situation. Friends are very healing. You need a little social interaction.
you're strong so it's just a matter of time until you get back into fight mode.
hugs and love
sarah
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Old 02-25-2013, 10:11 AM   #10
chrisy
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Re: just need encouragement

Tammi,
I've been thinking about you a lot, and am sorry to hear you had to be hospitalized again. Everyone who has posted is right. I could just say ditto but you know that's not my style!

TDM1 is not vanilla herceptin. For me I had flu like symptoms and it whacked my liver functions. And I was starting from everything basically being "normal" and minimal tumor burden. You've been through a lot over the past month and the fatigue is real - but give the TDM1 a chance. And be gentle with yourself while you continue to try and do "all the right things"

We know, the spiritual battle is sometimes even harder. Jackie's right, it's easy to push the fear aside with distractions, but it is still there. A few years ago I thought I'd give up fear for lent. I'm not catholic so i didnt get you are supposed to be sacrificing something,but it seemed like a good idea at the time. Of course it backfired and all I could think about was the fear! Who wouldn't be fearful.

I'm visiting my sister and always like going to her church. On Sunday, the message was about Peters denials of Jesus, and how profound a failure that was for him...and how we all fail in our faith, or our courage, or a million other ways. That does not make us lousy Christians, it's the whole reason we need grace. Then I had a "God moment" when lyrics in the closing hymn included "help me with my lack of faith" which was EXACTLY what I had been crying out to God the night before.

Most people do not come close to the kind of fight we've been engaged in for so long. So again, be gentle with yourself. Keep trying to nourish and rest your body as best you can.

And lean hard.

Much love,
Chris
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Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 02-25-2013, 10:52 AM   #11
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Re: just need encouragement

Awww, Tammy, what a lousy few weeks you have had...chock full of all those only-human kind of fears that haunt and haunt. And as a mom myself; remembering the trauma of the days when I could barely crawl across a room; forget about walk across it; for me it was really about the kids. I wonder if it is the same for you. You are feeling so so sick. You hate for the kids you adore to see you feeling so tired and sick and are loathe to even think about the unthinkable....
"I just hope you guys have some insight I wonder if it is time to call it quits or if that is even my call to make do i keep going as long as the onc is willing to treat"

Every single one of us (who has read your gutsy and honest thoughts) wants to rush into your home, scoop you up and hold you. Comfort you. Get on the floor and play with your beautiful kids. And I bet you are just too darn tired to think outside the box for yet another treatment or another approach.

You are struggling with your faith. And who wouldn't, right? Where is the justice (I am fond of shouting in my daily prayers). Spiritual counseling with a nun (and I am not Catholic) was a huge help for me. Maybe it is an option in your area.

Rely on your sister's here for the wisdom of their experience. Michka, Sarah, Chrisy all have good advice. My only two cents to add is that I would consider sending a biopsy for a tumor profile to see if your tumor has a mutation that matches to an approved treatment.

In the meantime; rest- knowing all of your Her2 sisters here would rush in your house and scoop you up and take care of you in a jack rabbit minute if we were neighbors; but since we live in the hinterlands, we are holding you up in prayer and meditation and love instead.
Stay with us and keep us informed on your path.
Love and hugs, and love and hugs,
Kim (from CT)
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2001 - Stage 0, lumpectomy, radiation, tamoxifen

2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.

2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle

2011 - Still Herceptin only and NED


2011, June - STOPPED Herceptin and kicked up my heels!

2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.


2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only
Received U of W vaccine clinical "booster" Vaccine


2022 On Herceptin and NED continues - WOOT WOOT!
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Old 02-25-2013, 11:14 AM   #12
NEDenise
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Re: just need encouragement

Tammy,
All good advice shared so far. I'm so sorry you have so much to deal with right now. I am in awe of the fact that as poorly as you feel, you still get up and get breakfast for your family. That effort, knowing how utterly exhausted you are, speaks volumes about how much you love your kids!

I hope once they're on their way to school, you do as our friends here have said, and treat yourself kindly and gently. Rest is what you need...and I don't think the Lord is particular about how you get it. Seriously, I've come to see Ativan as one of his healing gifts. When steroids are coursing through my veins because my brain mets are acting up...Ativan is a way for me to survive it all.

And, I know when I'm exhausted from treatment...having to accept help, when like you, I've always been the giver...depression comes on fairly easily. If you haven't already, may I suggest that you talk with our onc about some kind of med to ward off the worst of those feelings. If you try it, and it doesn't work...you stop. But...if you don't try, you'll never know...it could have helped you feel better physically and emotionally too.

Thinking of you, and lifting you in prayer,
Denise
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1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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Old 02-25-2013, 11:21 AM   #13
BonnieR
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Re: just need encouragement

Oh please never apologize for feeling "needy", if that is even the right word. What you are experiencing is deep and real. We understand it. I don't believe that taking Ativan suggests a lack in faith or a weakness. We need to do whatever is offered to us for relief and comfort Admitting powerlessness is a powerful thing to do. I admire you beyond words. This is a time to let people help you. Tell them things they can do for you. Take the kids to a movie, bring over food etc. conserve your strength Above all, keep the faith.
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Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 02-25-2013, 04:13 PM   #14
tammymarie1971
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Re: just need encouragement

You ladies are the best!!! Thank you so very much!! I wish we could all cyber zap us into the same place sometime and give out all these hugs we have!!! I'll bring the gatoraide!
Tammy
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Dx'd Dec'01 while 6mos preg. with #4. child (30yrsold)Mastectomy/AC chemo/radiation/ Recur:Mar'04 liver mets: 3 taxol/herceptin /liver resection/3 taxol/herceptin. Cured?
Recur: May'05 spine & Hip. New onc
treatment in Mexico Feb'06-Mar-06
back to Mexico June/July '06
Currently on herceptin/Zometa/Femara-recently added navelbine
Switched to arimidex Nov'06
ovaries removed June '07
ca15-3 in May'06 was 102
ca15-3 summer of '07 holding steady at 23!
ca15-3 slowly rising Dec & Jan 36, 38, 41 and Feb was 36
Feb '08 Liver, lung & Brain scan NED... bones are stable with even a couple spots gone. as compared with '06 scans
May '08 ca 15-3 is 55. Treatment is zometa, vinorelbine, herceptin and aromasin.
No signifcant changes.
Feb'09 Started Xeloda with herceptin..no more hormonals
Feb'09-June'09 tumor markers coming down again from 155 to 84
May'09 blood clots in lungs vena cava filter put in..Heparin shots daily for now.
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Old 02-25-2013, 04:36 PM   #15
chekmark
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Re: just need encouragement

I have no advise but want to say that you say you are weak but I see you as strong beyond words. To have gone thru this for so long and to still be putting one foot in front of the other everyday is amazing. One day at a time, one second of a time. I pray that you start to regain some normalcy soon. We just have to trust in The Lord as no one knows what he has planned for us. No one. U r amazing. Rest, do whatever your body is requiring right now and think about the now not the later. We r all here for you.
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DX Sept 30 2010 at the age of 49. Oh crap! 1.5 cm idc, stage 1 grade 3 er/pr+, her2+ no lymph nodes, mastectomy Oct/10. Started 6 rounds of TCH Dec/10 and will continue herceptin until Nov /11 and just started femara.
Stray kitten found my lump while I was playing with it. It is now my pet and my dog is not real happy about that.
Mammo good
last herceptin 11/21/11 YAY
reconstruction 12/09/11
Chapter closed 12/10/11, hopefully, fingers crossed
Bone scan, chest xray, clear
04/27/12 Expander removed, implant put in, ahh sigh of relief, much more comfortable
Sept 30, 2014, 4 years NED
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Old 02-25-2013, 05:58 PM   #16
Mandamoo
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Re: just need encouragement

Tammy - I hope it is all just a sign of the treatment wacking those mets. You are a true warrior.
A xx
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40 year old Mum to three gorgeous kids - son 5 and daughters 8 and 11
Wife to my wonderfully supportive husband of 17 years!
22 February 2011 - Diagnosed Early Breast Cancer IDBC Stage2b (ER/PR -ve, Her2+ve +++) - 38 years old
(L) skin sparing mastectomy with tissue expander, axilla clearance (2/14 affected) clear margins.
Fec*3, Taxotere and herceptin*2 - stopped due to secondary diagnosis

June 24 2011 Stage IV - Skin met, axilla node, multiple lung lesions

Bolero3 trial - Navelbine, Hereptin weekly, daily Everolimus/Placebo
February 2012 - July 2012 Tykerb and Xeloda - skin mets resolved, Lungs initially dramatically reduced but growing again
August 2012 (turn 40!) tykerb and herceptin (denied compassionate use of TDM1) while holidaying in Italy!
September 2012 - January 2013 TDM1 as part of the Th3resa trial - lymph nodes resolved, lungs slowly progressing.
January 2013 - herceptin, carboplatin and Perjeta (compassionate access)
April 2013 - Some progression in lungs and lymph nodes - Abraxane, Herceptin and Perjeta
July 2013 - mixed response - dramatic reduction of most lung disease, progression of smaller lung nodules and cervical and hilar nodes - ? Add avastin.
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Old 02-25-2013, 06:24 PM   #17
Mary Jo
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Re: just need encouragement

Hi Tammy,

I had to reply. Not because I have any advice on what you should or shouldn't do, because I do not know. I've never been where you are. But, I, too, am a Christian and I, too, love the Bible verse..."For we know that all things work for good for those who love God and were called according to His purpose." Romans 8:28. Of course, we both understand that our idea of "good" and God's idea of "good" could be totally different. Ultimately, it is/will be good....however, at the time, we may not see it as such.

Tammy, I'm not sure what will happen as far as your illness goes but I am sorry you are going through all you are. However, I am confident that your Lord goes before you and He knows what will be...."all the days ordained for me were written in your book before one came to be." Psalm 139:16. Trusting is tough stuff. I know. I fail at it OFTEN.

In our Lord's eyes, we are not failures. We are His children. He loves you.

As I finish typing this I ask God to cover you and surround you with His beautiful peace as you "wait" on tomorrow. I pray He will help you to live with only "today" ~ one day at a time. Today is enough for now. Praying strength and healing.

Sending my love to you my "sister!"

In Christ.....

Mary Jo
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"Be still and know that I am God." Psalm 46:10

Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

<>< Romans 8:28
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Old 02-25-2013, 06:36 PM   #18
linn65
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Re: just need encouragement

Tammy, I wanted to cry when I read your post. Geez. You sure are going through so much,and I sure hope it turns around for you soon.
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myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant

9/2012 Pre-adjunctive TCH chemo.

12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.

12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+

2/27/13 6 weeks of IMRT radiation finished

2/2013 Started on Tamoxifan 5 years.

8/2013 will take last Herceptin, 17 treatments total every 3 weeks.

BRCA1 & BRAC2 - Negative

August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.

3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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Old 02-26-2013, 07:08 AM   #19
NEDenise
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Re: just need encouragement

Tammy,
Just thinking of you, and hoping that today finds you a little less weary. Have you been able to get some rest? When I have trouble resting, sometimes I try to envision myself lying safely in the arms of Jesus...sometimes like a baby...sometimes as a little lamb...and sometimes as the full-sized me, like in the Footprints in the Sand poem (and he never even struggles under all the extra weight I'm lugging around these days ) It doesn't always help me to sleep...but I find it calms my spirit...and puts my troubles in perspective.

Lifting you in prayer, my friend...
Sending a warm cyber hug...filled with healing light,
Denise
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1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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Old 02-26-2013, 08:39 AM   #20
tammymarie1971
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Re: just need encouragement

Denise, thank you so much for asking.. I seem to be getting a bit more energy back..i even went out to value village yesterday for few minutes!! I love the idea of sitting in Jesus' lap!
Hope your scans all turn out great!!!
Tammy
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Dx'd Dec'01 while 6mos preg. with #4. child (30yrsold)Mastectomy/AC chemo/radiation/ Recur:Mar'04 liver mets: 3 taxol/herceptin /liver resection/3 taxol/herceptin. Cured?
Recur: May'05 spine & Hip. New onc
treatment in Mexico Feb'06-Mar-06
back to Mexico June/July '06
Currently on herceptin/Zometa/Femara-recently added navelbine
Switched to arimidex Nov'06
ovaries removed June '07
ca15-3 in May'06 was 102
ca15-3 summer of '07 holding steady at 23!
ca15-3 slowly rising Dec & Jan 36, 38, 41 and Feb was 36
Feb '08 Liver, lung & Brain scan NED... bones are stable with even a couple spots gone. as compared with '06 scans
May '08 ca 15-3 is 55. Treatment is zometa, vinorelbine, herceptin and aromasin.
No signifcant changes.
Feb'09 Started Xeloda with herceptin..no more hormonals
Feb'09-June'09 tumor markers coming down again from 155 to 84
May'09 blood clots in lungs vena cava filter put in..Heparin shots daily for now.
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